Blueprint for new and existing programs
In an effort to better standardize and improve the quality of palliative care services available nationwide, a consensus group has released new clinical guidelines detailing what services a palliative care program should provide and listing places where providers can go for more information and support.
The new guidelines were issued by The National Consensus Project for Quality Palliative Care, a consortium comprising representative members from the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, the Last Acts Partnership, and the National Hospice and Palliative Care Organization.
"In palliative care, which is a relatively new field in health care, there has been extremely rapid growth," explains Diane Meier, MD, FACP, director of the Center to Advance Palliative Care (CAPC) in New York City. "As recently as six or seven years ago, there were relatively few programs. As of 2002, there were 950 programs. And the number of new programs is probably growing 20%-30% per year. But there are quality concerns because, without a shared definition about what palliative care is or should be, there are a lot of programs doing very different things and calling it palliative care."
While many institutions have complex interdisciplinary programs that address a variety of needs, some may have a part-time social worker who has "palliative care" included in his or her job description, and others may employ a massage therapist and consider that their palliative care program. "A nursing home that has liberalized visiting hours may consider that their palliative care program," Meier adds. "While all of those things are good and helpful, they do not qualify as palliative care programs, at least in the opinion of those of us working in nursing and medicine."
The goal of all palliative care is to address patient suffering, she notes. Palliative care measures include aggressive treatment of pain and other physical symptoms, but also should address the patient’s and family’s psychological, emotional, and spiritual stress. It also should provide support for daily living, helping patients and families make medical decisions and ensuring that patient and family wishes are heeded.
Palliative care is properly delivered both by providers specializing in the discipline and by providers in other specialties seeking to improve every aspect of care for seriously ill patients.
In 2001, members of the five national organizations decided to convene the consensus project in an attempt to develop national, evidence-based guidelines to help standardize the delivery and quality of palliative care services.
Over the next three years, a 20-member steering committee and 100-member advisory panel developed draft guidance that was then circulated to other stakeholders in palliative care for their feedback. The resulting document takes into account the perspectives of health care providers in a wide variety of settings.
Sections of the guidance dealing with pediatrics and long-term care are particularly compelling, Meier says. "We got some really helpful feedback. The draft guidelines were completely overhauled to include pediatrics and feedback from peers and colleagues in pediatrics," she explains. "Rather than assuming that the guidelines apply equally to children and adults, there are numerous sections focusing exclusively on the special needs of infants and children, as well as the children of patients."
The document addresses the specific needs of the long-term care setting, which has different financial incentives, financing patterns, and disease patterns, she says. "This editing process, while lengthy and time-consuming, was extremely valuable, and the guidelines are dramatically improved in both their applicability and their quality as a result of that process," Meier says.
Guidelines — not standards
Programs in different settings and in different stages of development will find the new guidelines useful, says Charles von Gunten, MD, PhD, FACP, medical director of the Center for Palliative Studies in San Diego and associate clinical professor of medicine in the cancer symptom control program at the University of California-San Diego Cancer Center.
"There are really three groups out there," he notes. "The first group is the group that has just heard the term palliative care,’ and they know they need to do something, but they are not sure what. The second group [is composed of] those programs that have something in place that is very limited in scope. They can use this document to see where other programs are and where they really should be headed. The third group [includes] institutions that have thorough programs in place but can use the document to benchmark where they are and decide where they want to go in the future."
Particular programs will continue to have unique features based upon their care setting and individual population. For example, a palliative care program in a large hospital will have different goals and a different patient population from a program in a nursing home in a smaller community, so their programs will naturally vary.
"That is why it is important to note that these are guidelines, not standards," he says. "We want people to take into account that this is a relatively new specialty that has grown rapidly and has a lot of room for growth in the future."
Palliative medicine also has changed significantly in the last several years, and providers need to remember that it is an evolving specialty.
"So many times, we think of improving palliative care as doing things that we haven’t been doing and should have been doing," von Gunten says. "Many institutions tend to feel ashamed and defensive or guilty, but that really doesn’t serve a purpose. We need to remember that there is simply more now that we can do for our patients who are suffering than we could do in the past. Our main focus now should be on making sure that everyone in this country has the same access to these new strategies and treatments, as is possible under our current medical system."
Many have told Meier that they use the new guidelines as a checklist to see where they are and now are aware of the important palliative care resources they already have that may be underutilized.
"For example, many hospitals have extensive case management capabilities, but they don’t work with the people who discuss symptom management and goals of care with family," she explains. "And many hospitals have contracts with hospices on paper but not in an operational way. Just having that list was a way for people to really appreciate the riches they already had in front of them that they didn’t know about."
Meier has been pleasantly surprised at the reception the consensus project and its work have received, and she feels it indicates a great deal of support for improved palliative care nationwide. "When we presented this to the American Academy of Hospice and Palliative Medicine in January, we weren’t sure if anyone would show up. But it was standing-room-only," she notes. "There were 7,000 downloads within the first 24 hours. People knew about what we were doing, and they were interested."
At a time when there are so many disagreements about strategies to improve the health care system, this is one area that everyone can agree on, adds von Gunten. "I don’t think you can find anyone who doesn’t think more effort needs to go into improving palliative care and who doesn’t feel that they want to do it," he states.